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Monthly Archives for April 2015

In addition to the general fatigue and pain that cancer or its treatments can bring, the other reasons I’ve been having difficulty walking are on my feet. I’ve got a painful corn on the bottom of one foot, and until this week, an ingrown toenail on the other.

I feel like I’m constantly doing cost benefit analysis with every part of my life, whether it is in terms of physical energy, emotional energy, or financial resources. Do I buy the not inexpensive face cream? It’s not like I have to worry about wrinkles 10 years from now. (Please ignore the ones I already have).

When my toenail started getting painful, I put off visiting the doctor, all in the name of frugality. Maybe also some martyrdom thrown in to spice it up. And maybe a bit of “I just don’t want to see a doctor if it isn’t life threatening, cause I’m sick of the hospital .” It finally hit me how stupid this was. Here I’ve been trying to advocate for myself with palliative care, etc., and yet I wasn’t going to allow myself to have a simple procedure that would greatly increase my quality of life. What is wrong with that?

So that morning I called Kaiser and had an appointment 7 hours later. No pain from the procedure, except the initial shot. It is easy to take care of, and though I’m hobbling around, I’ve been doing that one way or another for the last few months. In a few days, I probably won’t have any pain at all from that foot.

What was I waiting for? DUH.

In other news, between my scan results, going off two meds, and taking a marijuana tincture once or twice a day, I’ve been feeling good, emotionally and physically. My fatigue has lessened, and my outlook is positive. I’m even planning a trip to a big quilt show next February. Because, of course, I’m going to be alive and kicking then.

Well, after quilting this one turned out totally wonky – wouldn’t lie flat for anything. So I had to get serious and engage in a little quilt bondage and water sports. Which is to say I sprayed it down and wrestled it flat on a knitting blocking board. Then I shoved it under my bed and forgot about it for a few days. When I pulled it out this morning, it decided it was going to behave and lie flat like a good little quilt. Got it squared and bound, and now I’m ready for lunch.

If you’re friends with me on Facebook, you probably already know that the results of my scan were good. There was shrinkage in the lung lesions as well as in the abdominal areas. (Or as some of my friends would say, “Hehe. Shrinkage! Hehe”. Yes, my friends are 12 year old boys inside.)

So. That’s good. The Inlyta is working. Knowing this makes dealing with the side effects a lot easier.

Most of today was spent chilling in the backyard or working on a quilt in my room. I keep making excuses so that I don’t have to finish pieces, but at some point I’ll need to get over it and just get it done. Part of the problem is my constant state of indecision, coupled with cancer brain ADD. Hopefully I’ll work my way through that. But for now, here’s my current project that allows me to avoid all the UFOs.

It’s been a busy couple of weeks, with spring break, visits from my husband’s siblings, staycationing in the Bay Area, and a quick trip up to Humboldt to see my parents and meet with a doctor up there.

Cancer-wise, I think the most important part was meeting with Dr. Fratkin, a palliative care doctor up north. My mom heard about his practice, ResolutionCare, and encouraged me to check him out. We had a terrific meeting at my mother’s house – Dr Fratkin, Reil, my mom, my stepfather, and I. Should have asked my dad to come, too, but cancer brain. We began by introducing ourselves. Fratkin was interested in finding out who I am, not the cancer, but me. (All props to my oncologist, Dr. Shek, but that’s not where we go.) He asked the others about me, and a bit about them and our relationships.

We talked about what I hope to get from working with him, and I explained how I felt about the palliative care crew (a nurse and a social worker) that I’ve been working with at Kaiser. They’re nice. They’re caring, but they seem timid, like they, too are trying to get the lay of the land. I think they might be new at this, or it might just be a personality trait thing – they don’t want to offend me. What I’m looking for is someone to whom I can turn, who knows about this process, and can help guide me through treatments, side effects, and all the decisions I’m going to have to make. I want a rock. I think I may have found one.

He also noted that there seem to be two kinds of people, those who look at life and accept the realities, and those who look at the life only as they want it to be. Obviously, I’m more in the former category, but noting the differences explains some of the issues I’ve had in my social life recently.

The plan now is that I’ll send him my doctor’s and the palliative care team’s contact info, and he’ll make contact so that he can work directly with them (and maybe help guide the Kaiser palliative care team, too!) We plan to do video conferencing calls every few weeks. He wants me to take my marijuana tincture twice a day in small amounts (I’m not going to argue), and to discuss going off cholesterol and maybe diabetes meds. “You’re not going to die from high cholesterol.” Just to keep things simple, or simpler.

ResolutionCare had a crowdfunding campaign recently. While they raised the money they were hoping to, every little bit counts. If you’d like to learn more (and maybe donate), visit the ResolutionCare website.

In other news, I had a CT scan this morning, and should find out the results later this week. This scan was to determine whether the Inlyta is working. (That means no growth or shrinkage.) It was a pretty rough visit for me. Usually CT scans are easy, but I was having a lot of abdominal distress, and just all around felt like crap. I was very glad my friend, Cynthia, was there to drive me home.

Still having lots of side effects – diarrhea, fatigue, some pain (though not too much), and the burning in my mouth with spicy foods or even toothpaste. I changed to Biotene, and that helps, although it tastes terrible. The walker has been a godsend. We were able to go to Alcatraz, and Reil and Molly pushed me around the cells. We even did an Ikea run and a side trip to Bed Bath & Beyond. And I made it through all of that!

My lovely friend Jill picked me up this afternoon for an excursion to Penneys. This was exciting to me for two reasons. First, Jill had to go get a job last fall, and she’s not free to be my daytime art and play partner anymore (I’m very glad she’s got a job doing what she wants to do, but why can’t art teachers have only evening hours?), so it was great to get a few hours with her.

Also, it was the maiden voyage of the new walker! And I’m happy to report that it went exactly as I hoped. ﻿﻿We had to return a few items, then spent a little time shopping. The walker helped me maintain a steady gait, so although I was pushing this contraption, I didn’t feel all gimpy. I used the time we spent in line to sit and rest, which allowed me to walk out of the store in a happy mood, not totally spent.

It was interesting using the walker and seeing a little better what it’s like for wheelchair users. Elevators, not escalators – took me back to when the kids were small and in strollers, though I’d forgotten where they were in that particular store. It was difficult to maneuver through some of the racks of clothing, and because someone else was using the handicap dressing room, I had to wiggle the chair around in a smaller room so I could shut the door. And, as we were walking out to the car, we had to wait a couple of minutes for a car to move away from the sidewalk cutout that would allow me to roll into the parking lot.

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i didnt get this vest Mistake?

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Now I have just a few updates to make to the chair. I need to pimp my ride. Cynthia said she’d do flames for me. Marissa offered to bedazzle it. I need a pad for the seat – maybe I can make a cushion that says “Cancer Sucks”. And, although there’s a basket under the seat, I think I need a bag to go on the chair back.

I guess I could also go back and get a couple of those fuzzy vests to line the whole thing, and really make it my pimp wagon.